Dealing With Tantrums

I think I've used this title before but we do it a lot.

Yesterday, Alex threw such a massive tantrum at school that they went to their big guns: taking away his van ride at the end of the day.  He loves riding in the van.  Instead, I had to go pick him up.  The point was to avoid rewarding the bad behaviour with something he liked.  Even if the reward is a regular part of the day, it can still be reinforcing.

Nathan also had a difficult day.  Lots of shouting, stamping of feet and refusing to cooperate.  He didn't want to come home in the car, he didn't want to leave the car to go in the house, he didn't want to say hello to Nana, he didn't want to put away his things, he didn't want to get dressed for art class, he didn't want to get in the car ... you can see how the list goes.

With Nathan it was a little trickier.  He likes art class (most of the time), so would it be rewarding to make him go even if he doesn't want to?  On the other hand, he shouldn't learn he can get out of obligations by behaving badly.  With this, I went with what I feel is the key issue: control.  Nathan and I are locked in a battle for control and I will not be losing.  If he asks politely, then I consider his requests but if he is threatening and tantruming, no dice.

This is one of the keys to managing your kid's behaviour.  Figure out what the payoff is for a challenging behaviour.  Are they using it to get out of doing things?  Are they doing it to get a reward?  Are they doing it to get attention?  Or are they doing it because it feels good somehow (this usually applies to self-stimulation)? 

It's important to remember they don't have to get the reward every time.  I was told that 1 time in 10 is enough to reinforce the behaviour and that number can go even lower if the reward is particularly desirable (how many of us buy lotto tickets despite never having won a jackpot?). 

Once you've figured out the reward, then you have to make sure the behaviour doesn't give them that.  If they're yelling to get out of doing homework, they have to do the homework.  If they're pinching to get attention from Grandma, she's got to ignore it.  The only exception is when the behaviour is self-rewarding, then it's trickier and I've found I have to try and substitute another behaviour which gives the reward but is more socially acceptable. 

So when we're looking at tantrums, I have to make sure Nathan doesn't have control over his environment and for Alex, who usually uses tantrums to escape doing things he doesn't want to do, he has to do what has been asked.

Debate Over Travel

If you follow this blog regularly, you know we're planning a trip to Toronto this summer to participate in my sister's wedding.  It'll be a three day event and Dave and I have been undergoing many debates on how to manage the boys and the expense.

We were having an argument yesterday about whether or not Nathan, our aide and I should take the train up or drive.  (Dave and Alex will be driving up separately.)  My point of view is that I don't want to deal with two cars in Toronto, I want the opportunity to relax somewhat during travel (as I expect to be on duty the rest of the time) and Nathan will be more excited (and hopefully travel better) with the train than the car.

Dave's point of view is that it will cost more money to take the train. 

We were arguing about how sometimes it's better to spend a little more money for convenience when Dave brought up something which I thought we had resolved awhile ago.  He said he thought it would be better if Alex didn't go at all, that there was little to no chance of him making it through an elaborate ceremony and late dinner.

He has a valid concern.  Alex is likely to have problems and I would put the odds at about 70% of him having to leave early and return to the hotel.  This is one of those eternal debates we go through: is it better to accept that Alex probably won't succeed and spare ourselves and him the potential turmoil or is it better to give him the opportunity to surpass our expectations while making preparations for failure?

I've made a number of such preparations: bringing the aide with us to give us an extra pair of hands, having Alex come up later in the weekend to give a better chance of him being fresh for the wedding, ensuring their part in the ceremony is minimal and easily skippable in case of trouble.  Other preparations are just givens: making sure he has a quiet area to retreat to, bringing toys and an iPad, letting him move around during the event, bringing familiar food, scoping out parks near the venue so that he can have some running around time between the ceremony and dinner.

We'll probably always come down on different sides of this equation.  Sometimes I feel it's better not to push him and sometimes it's Dave who wants to let situations lie.  But at least it's something being discussed in the open.

The Start of Birthday Season

This weekend marked the start of Mackintosh birthday season.  With everyone's birthday being so close, we've done a single family party for the last couple of years.  As May gets progressively busier (Comicon and the Big Beaver Camp Out), the family party has gotten pushed back into April.

We went with a Minion theme this year but I avoided going overboard on the decorations.  My biggest find were Minion themed balloons:

The boys wore their Minion shirts and did fairly well with having everyone in the house.

 

 

I picked up our usual ice cream cake from Dairy Queen and there was only one small incident where Alex blew out Nathan's candle.  I relit it and Nathan blew it out.  Crisis averted.

 

 

 

 

For some reason, I found it very difficult to relax during the party and to settle afterward.  Maybe it's the monotony of dealing with the same problems over and over again (Nathan wants to control the agenda, Alex can't accept no for an answer, dealing with everyone being an expert while I'm trying to deal with a situation, constant checking to see if Alex has soiled himself, feeling as if I'm the only one who can be relied on to get things done.)

 

I'm hoping I can shake it off and regain some cheer but I'm still frustrated with a low tolerance level.

 

The boys enjoyed the party, except toward the end where Nathan wanted to go out with Alex and Avi but I wasn't up to going along, so he couldn't.  And there was no one else who could step up to do it.  So there was a burst of tears and hurt feelings to finish off.

 

I wish I didn't feel so tired and frustrated.  This is a happy occasion and one of the big events of the year for the boys.  I remember how upset I was as a kid when parental frustration spilled over onto my events.  I don't want to do that.  It's not fair and it's an awful thing to do.



Happy Secretaries' Week

I didn't know it was Secretaries' Week until one of my bosses sent me a lovely bouquet of flowers.  The card thanked me for the excellent work I was doing.

I sat down and tried to wrack my brain as to what I could have done to prompt flowers.  I hadn't averted any particular disasters or completed a difficult project.  It's actually been fairly routine at work of late (for which I am grateful and definitely not complaining). 

She told me it was Secretaries' Week and she just wanted to share her appreciation.

I definitely feel appreciated now.

Pointed Glare At the Government

I'm generally a typical Canadian, believing in peace, order and good government.  I don't expect a giant bureaucracy to function flawlessly but for the most part, it seems to muddle in the right direction.

Except now.

Like a dutiful citizen, I filed my taxes several weeks ago.  Which is why I was bloody surprised to get an additional T4 in the mail this week.

When I left the government two years ago, I told them I wanted to cash out my pension so I could reinvest it in RRSPs.  They finally got around to doing it this year.  (Tempted to charge them for two years of lost interest accumulating over the course of my lifetime but that's a separate issue.) 

Apparently a small portion of that money counted as straight income and thus was included in a T4.  I wasn't expecting it and now have to refile.  And I suspect I'll have to send them something since I already received and cashed my tax return.

I'm more than a little irritated to get an additional tax document less than a week before the filing deadline.  Also annoyed that no one told me to expect it so that I could hold off filing until I got it.  I'll be super annoyed if they end up charging me interest on whatever they think I "owe" them.

Picture me glaring at you, government.  The piercing stare of a disappointed mother preparing to send you on the guilt-train.  That's right.  Hang your heads in shame.

When Fighting A Battle of Wills, Losing Is Not An Option

I think all parents must go through this.  You catch your kid doing something wrong and in a split second, you have to make the decision to "notice" it and deal with it or pretend you don't see it and let it slide.

We're starting a new behaviour program and one of the criteria is to not let Alex get away with any aggression, no matter how minor.  Which means we have to step up how often we notice.  We've always intervened on physical aggression between him and Nathan but now we have to also start intervening each time he throws things or knocks something over.

The therapist pointed out that by making attacks on Nathan and I the go-no-further line, we may have inadvertently encouraged using them as an escape strategy.  He knows they won't be ignored and doesn't have the empathy to stop on his own.

Last night, Alex threw a toy rather than hand it over to Nathan.  So, with a slightly trepidatious heart, we went into action.  First, we made him hand over the toy, which increased the screaming and tantrum level.  Next, he went into a time out for throwing the toy.  He would not settle in the time out and both Dave and I ended up having to actively prevent him from throwing things or kicking the table and chairs.

Of course, this happened around dinner time and after half an hour, it was time to eat.  Alex still was not anywhere close to settled, so we made the decision to move his time out to his room to give us time to eat.  Then we would bring him back to finish the time out and have his meal.

Maybe it was the right decision, maybe the wrong one.  We put a lot of things on hold in our family to accommodate Alex and perhaps we've encouraged tantruming as a way to get sent to his room.  But I felt Nathan (and us!) deserved twenty minutes of a quiet meal without having Alex screaming at us and attacking us.  Keeping him there would have only continued to ratchet up tension.

We did make it clear that his actions were sending him to bed early but wouldn't let him get out of eating (a usual source of conflict in the best of cases).  I guess we'll find out how we did when we go back to the behaviour therapist next week.

Search For the Gup

About a year ago, we decided to start giving Nathan an allowance.  Like most kids, he would ask to play arcade games at the front of the store or ask for toys as we went through.  We thought we would give him his own money to spend on such things.  We set it at $2 a week, enough for a game or two but low enough he'd have to save if he wanted a particular toy.

He's turned into quite the little saver.  The first thing he saved for was a toy helicopter, which took 10 weeks. 

For the last three months, he's been saving to buy a particular toy: the Gup X from the Octonauts.  Last week, he finally had enough to cover taxes and we went over to Target to pick it up. 

On our way, I told him not to worry if Target didn't have it.  We'd just go ahead and order it online.  (I'd checked to make sure it was available on the website.)

Target was indeed sold out.  Nathan was quite cheerful and excited about the idea of ordering online and having a package delivered.  I was feeling good about myself.  I was encouraging my child to save and delay gratification and it was a good lesson in finding another way rather than throwing a tantrum.

We settled in front of the computer and I confidently went through the ordering process.

Only to discover that Target.com does not deliver to Canada.

Uh-oh.  Okay.  Regrouping.  Surely Toys R Us will have it.

Only the American site.  Which also doesn't deliver to Canada. 

Amazon?

Nope.

Walmart?

Nope.

Sears?  The Bay?  Anybody?

Nope.

Crap.

I had to explain to Nathan that I couldn't find the toy.  He took it with a quiet, crushed acceptance which made me feel absolutely horrible.  I promised we'd look into other options and we'd figure out a way to get the toy for him.

Eventually we did find a method.  A family friend who lives in the States offered to let us send it to her house and she'll bring it with her when she comes to Canada later this month.

What To Do When It's Out of the Blue?

We had a fairly nice dinner with my family on Easter Sunday.  The kids were relatively well behaved (some irritable periods with Nathan and Alex seemed tired after a marathon day of riding OC Transpo).  We managed to get out at a reasonable time and were pulling into the driveway just in time to give them a few minutes of play before bedtime.

All in all, I was ready to call it a good day.

As Dave and I picked up the bags of toys and leftover food, we began to walk to where the boys were waiting quietly and patiently on the front porch.

Then Alex reached over and straight-armed Nathan right into the brickwork.

There was no provocation.  Nathan wasn't being a pest.  Alex didn't have a demand.  (The two usual triggers to his aggression.)  Alex didn't even seem upset.  It just happened.

I immediately confiscated his toy from Easter and told him he'd be going right to bed.  Nathan had a scraped up arm and some scratches on his face.  He was crying, the simple desperate cry of a little boy who doesn't understand what happened.

Dave put Alex to bed and I tried to comfort Nathan.  But I'm at a loss to figure out how to protect him.  This just keeps happening.  Not on a daily basis (thank the gods!) but even once a month is too often.  And it's happening more than once a month.

We've begun working with a behavioural specialist on Alex's compliance.  Hopefully once he's less upset at being asked to do things, the aggression will go down.

But meanwhile, what do I tell Nathan?  It's already shaped who he is.  He spent the critical first three years in an environment where someone in his family hit him.  It may have been a brother instead of a parent but it doesn't change the outcome.  His home simply wasn't safe and it's left him with a lifelong sentence of anxiety.  

Should I tell him just to avoid his brother at all costs, sacrificing all hope of a relationship in the future?  Should I make him more afraid by telling him he should never be more than two feet away from an adult?  I've had suggestions to teach him to hit back but that has other long term problems and would likely only escalate the situation.

I know of families who have had to make the difficult decision to sacrifice one of their children to protect the others, sending a child with special needs away so that the rest of the family can be safe.  Sometimes the child is turned over to residential programs, sometimes to a relative, sometimes the parents split up in order to separate the households. 

I can understand the difficult choice but the thought repulses me.  Maybe it's arrogance, but I believe I'm the best person to guide both of them into a better place, which means I need to stay present in their daily lives.  Which makes Nathan being a victim of his brother's aggression inevitable.

Enjoy the Four Day Weekend

Or three days for some of us.

I'm going to give myself a little extended break and I'll be back on Monday to let you know how we fared over the holiday.

I hope everyone enjoys the time off school and work.  And that your kids don't drive you crazy with boredom and upset over routine-changes.

The Party Is When?

Up until yesterday, I'd been feeling quite proud of myself for catching back up with things.  Until someone pointed out that our family birthday party was next weekend.

Oops.

And that means Nathan's birthday party is the weekend after that.

Double-oops.

Time to get my butt in gear and buy some invitations, order a cake, get balloons.  Time to decide which of my fantastic ideas are actually practical and which ones get regulated to the Martha Stewart idea bin in the sky.  Like making a Captain America shield cake for Nathan's birthday.  Or making paper shields as party favours for his class.  Both good ideas, both ideas I'm capable of executing.  Just maybe not in the time I have left.

Sometimes I think I'm overshooting myself, making sure we have entertaining toys at the house or that we have fun parties.  It's kids, right?  Kids don't care and can entertain themselves for the most part.

Except that I recognize it will always be difficult for the boys to have and keep friends.  They'll require lots of social coaching to make sure the friendships stay reciprocal (and careful attention to make sure they aren't exploited).  But all the coaching in the world isn't helpful if we don't have kids to practice it on.  And kids are, at their heart, selfish creatures.  They're happy to overlook some oddities if a situation is fun and they have a good time. 

My hope is that, growing up, the boys will have a circle of friends who no longer see them as odd.  They'll see the awesome individuals that we see and won't be offput by quirks.  But it takes a lot of effort and time to build up a social circle.  I have to remind myself why it's worth it to arrange lots of playdates and keep up my own social parent contacts on days when I'd honestly rather collapse in front of the TV.

Threading the Needle for Behaviour Management

Nathan does not wake up happy.

Normally this isn't a problem because he wakes up at least half an hour before everyone else does.  This gives him time to get through his grumpy phase and be bright and cheerful when we start the morning.

But sometimes, he doesn't wake up early.  And sometimes it's a school day, so I have to wake him up.  On those days, I have to tread a very fine line.  Too much and we hit the tantrum alarm, risking the whole day.  Too little, and he's still asleep and the whole process has to be started over with less time.

I can't be too firm about waking him up.  I usually try to intermittently and gently tickle his feet, just enough to be irritating but not enough to actually irritate.

I can't talk to him, unless he wants to engage me.  Any attempt at conversation will provoke a screaming tantrum.  But at the same time, I have to verbally warn him that I'm there or else he'll get surprised and that will provoke a screaming tantrum.

It reminds me of the old game "Operation" except that instead of a shock and buzz, I get a tantrum.

My husband and I actually have a disagreement about handling this.  He thinks we should just wake Nathan up and use it as an opportunity to teach him to regulate his own behaviour.  While I agree it's important to teach him not to scream and yell at people just because he's upset, I think it's too much to ask first thing in the morning.  Sadly, it's not like there aren't other opportunities through the day. 

My view is that the goal of starting the day well and setting him up for success are more important than teaching him self-regulation in that moment.  Obviously, if I fail and he does start screaming, then it has to be dealt with because we can't reinforce the behaviour.  But if I can avoid it and still get him up and moving in a decent amount of time, then I'll call it a win.

It's not the only time we've come down on opposite sides of the "pandering/accommodating" or "teaching/tantruming" decision.  Most families have these disagreements.  But when your child has autism, it's critical to keep things consistent.  So one of you is going to have to bow down and do something he/she disagrees with in order to maintain consistency.  It's not easy but it is necessary.

Big News for Funding For Autism

For the last couple years, the Special Services At Home funding program hasn't had any money to give out.  They would accept applications and people would qualify but get a letter saying there were simply no funds.

The Ontario government is planning to eliminate the waitlist for funding.

This is a big one (assuming they actually do it ... not to be cynical but I've learned not to get too excited about government programs until I have cash in hand). 

I know people who have decided not to bother applying because of the lack of funding.  Which may be fair but now is the time to make sure you get on the list.  Because who knows how much longer it will be until this batch of funding is all tied up.

Here is information on the program and links to the application.

Gack - A Disney Gaffe

Having finalized our flight, I decided I should pay down the balance of our resort reservation.  So I logged in and tried to figure out how to do that.  I noticed a little star in the "cart" area and decided that must be it.

Wrong.  It turns out I ended up booking an entirely separate vacation package.  I only twigged to it when I noticed it gave me a different confirmation number.

I called Disney and got it all sorted out.  Luckily, I guess I'm not the first idiot to make this mistake.  I was particularly desperate to make sure our character dinner reservations weren't lost.  I've looked and the dinners are completely booked for the length of our reservation.

But now it is settled and we still have our character dinners.  We have our Magic Express reservations.  It looks as if we're completely good to go on the Orlando side (except for confirming with the special diets people, but that'll be a bit).

Now I just need arrange passports (good luck to us getting Alex to stand looking straight ahead with his mouth closed), travelers cheques, talk to the customs people to see if there's some kind of form we can fill out to jump the line, sew Alex's Disney Prince costume for our dinner with Cinderella ...

I'm starting to think I haven't accomplished as much as I thought.

The Downside of Trying for Discount Airfare

I've mentioned before about how Air Canada has a medical companion program with discounted seats.  With our trip to Disney, I naturally printed out the form and then gave it to my doctor to sign.

And waited ... a week and a half.  Which isn't horrible but ended up being kind of critical.

You can't book the flight until you have the form.  Because you can't buy the ticket for the companion, if you book in advance, you risk selling out.  If you don't, you risk the flight selling out but at least your kid isn't stuck on it.

By the time we got the form back, Air Canada only had one flight going to Orlando on the day we needed.  And it landed at ten minutes after midnight.  Which meant the Magical Express wouldn't be running and we would be dealing with one incredibly cranky child.

What to do?  What to do?  I started looking into other carriers and after a jaw-dropping price reveal on American Airlines, I booked our flight on WestJet.  They also have a medical companion program but from what I can tell, discounted flights are only offered within Canada.  However, you can book all your tickets and then get a discount on the companion one, which is a real bonus.

It's still worth filling out the form since it gives us additional help at the airport, such as being able to go through the priority queue for check-in and security.  And it makes sure we get seated together without us having to pay the ridiculous seat selector fee.

We will arrive in Orlando in mid-afternoon, which should allow a leisurely check in, some time to explore the resort and swim in the pool and still call it an early night before we go wild in the Magic Kingdom the next day.  That is much more civilized.

Free Workshop for Families With Autism (April 26)

Hi all,

I found out there's going to be a free workshop in Ottawa on Saturday, April 26th (9-5) at the Southway Hotel on Bank Street.

It's sponsored by Quickstart and it's to provide strategies for parents/caregivers to help their children and help to connect parents in a support network.

Here's the list of presenters and topics:

Dr. Yolanda Korneluk, psychologist - Introduction to autism and child development, Managing challenging behaviours.

Dr. Robin Gaines, speech pathologist - Strategies to promote communication

Veronique Chiasson, occupational therapist - Connect with your child through play and everyday activities

Panel Discussion: Q&A with the audience

To register, contact info@quickstartautism.ca and include your child's name, date of birth and your contact information (name, email and phone number).  There's limited space so I'd recommend signing up quickly if you're interested.

Starting To Feel Like An Extension Of My Car

In Hitchhiker's Guide To the Galaxy, Ford Prefect has a slight misunderstanding about who is the dominant species on the planet.  He thinks the cars are in charge.

I'm starting to think he may not have been entirely wrong.

As a casually environmentally conscious individual, I generally try to run errand-chains to save on gas.  Rather than hit one store, there and back, I'll try to hit at least two or three. 

Lately, I've had to spend several hours on errands and chauffeuring.  Saturday, run across the city for Alex's music lesson, back across the city for a birthday party for Nathan.  During the birthday party, I went to four different stores to pick up various supplies.  All of them were things I'd been waiting to do until I had time and was in the right part of town.  Sunday, I had my Ottawa Romance Writer's meeting, which meant a trip to one restaurant for a board meeting, back to Mlacak centre for our regular meeting and the workshop and then off to another restaurant for the post-meeting social gathering.  Monday, the usual run of groceries and a visit to the dentist.  Tuesday, go into the office downtown for a meeting and on the way back: visit to the library, fabric store and the doctor's office.  Then run Nathan back downtown for art therapy and rush back to get to my own doctor's appointment.  Wednesday, lunch with some friends and a run across town to the only pharmacy that carries Alex's liquid vitamins and to Farm Boy to get the fruit I really should have picked up on Monday.

Normally, most of my driving is local but I seem to have hit a cluster.  It's definitely impinging on my time to write or get chores done.  Individually, they're all such small events.  Each one is necessary and most are enjoyable (except the dentist).  But it's adding up.

I'm also doing a bit of a drown in paperwork.  I've got the Special Diets form to complete for our Disney trip, the application for a medically necessary discounted flight with Air Canada, the contract for Nathan's birthday party, our passport applications and data collection for the behavioural therapist for Alex.

A Inside Look At Autism: Elizabeth Moon's The Speed of Dark

Autism and Aspergers are trendy choices for writers these days.  Characters who are supposed to be on the spectrum are appearing more and more frequently.  Sometimes they're done well but most of the time ... not so much.

I've found what I consider to be an exceptionally good effort to tell a story from an autistic point of view.  Elizabeth Moon's The Speed of Dark is a novel set in the near future, told from the perspective of a man with severe autism.

Lou is the one of the last generation of people with autism since a genetic treatment has been developed which can treat children in utero.  He is told that he must take a new experimental treatment or be fired from his job.  The novel goes with him as he struggles to understand why people are so upset and what he is supposed to do.

I've seen other books with central characters with autism, like Matthew Hughes "Hell and Back" series.  (That one is funny but is not a good example of autism.)  This is the first one where I felt the author really captured the difficulties of dealing with a neurotypical world where the rules are constantly changing and people expect one thing but do another.  Her description of the internal perspective of stimming struck me as incredibly insightful.

I think this would be a great book to recommend to people who want to understand what it's like to live with autism.  Lou isn't childlike, selfish or stupid (which are three of the common approaches to dealing with characters with autism), he's a man whose brain works differently.  The limitations are clear, but so are the exceptionalities.

Late Night Wedding

This weekend, my sister talked to me about the timing for her wedding.  It looks like it's going to be a late afternoon/evening event.  The ceremony isn't likely to start before 5 and dinner won't be served until 8:30.

This makes it a challenge but not an insurmountable one.  It means the boys will have to be fed early, probably between the ceremony and the official dinner.  But I always assumed they'd have trouble with the buffet anyway and would likely eat on their own.

Thinking about it, I think the real challenge will be boredom.  My sister has thoughtfully arranged for a quiet area they can go if they get overwhelmed.  Which is good, but we'll only have a finite window of "good" time before they've exhausted their entertainment possibilities and will want to go elsewhere.

We'll have to be at the site at least a half hour before the ceremony to be part of the processional (which the boys will have to participate in).  Then the ceremony itself is an hour (although we've been told it's not a problem for the boys to move around).  Then there's a 90 minute gap while the wedding party has pictures done.  Then comes supper and eventually dancing.

The critical part is the 90 minute gap.  The boys will already be a little bored and irritable from the ceremony, as all children are when it comes to adult events.  If we stay at the venue and let them play on their iPods or run around, I suspect they will be bored and ready to leave by the time things get going again.

I also have to recognize that my husband is likely to be anxious himself.  Whether it's his Aspergers or just his personality, new events make him upset, particularly if he doesn't understand the rules.  This usually makes him crack down hard on the kids to keep them from bothering other people.  And because he's upset, he's harsher than necessary.  This is one of the reasons why I'm insisting on bringing along an aide to help us.

Picking an aide to help with this kind of situation is a tricky business.  I needed someone who travelled well and whom I could tolerate being in close proximity to for the weekend.  I need someone with initiative, because I'll be busy and Dave will be struggling.  And I need someone familiar with Alex, who has a good rapport with him.  My first choice was unfortunately busy with a family reunion but I'm hopeful on my second choice.

I'll have to do some thinking.  Will the boys be better off returning to the hotel to eat (or maybe a local fast food place, since they'll probably be bored of the hotel as well)?  Is there someplace nearby that we could let them run and play outside?  Although they'll be in their bridal party outfits, I'm not particularly worried about that after the ceremony.  If it means they're happy and participating in the rest of the wedding, then a little dirt or grass is fine with me.

Parental Confessions

Hello, my name is Jennifer, and I have a confession: I hate the Magic Schoolbus.

Nathan loves the Magic Schoolbus series and ever since school started, every week on library day, there has been a fresh installment of nails-on-chalkboard educational fun.

I'm not sure why I dislike it so strongly.  I'm in favour of getting kids excited about science and the world around them.  I like imaginative and whimsical stories.  The writing is insipid, but no worse than the majority of children's books. 

But for some reason, I wish Miss Frizzle and her class would vanish into a black hole and stay there.

Recently, Nathan discovered they made a TV show out of the Magic Schoolbus.  I lied and said we don't get it on our TV.  Because if I have to watch it over and over again, it's going to make me miserable.

Nathan loves it and for that reason, I try to be enthusiastic.  I read the books over and over at bedtime.  I try to ask questions and draw him into the story.  I don't want to spoil his enjoyment.

I'm sure my parents hated some of the things I subjected them to.  And like most non-abusive, non-psychopathic parents, they pretended to like it, too. 

Working on Alex's Bed

Two years ago, Alex decided he didn't want to use a bed any more.  He wanted to have his camping mattress right on the floor.  We shrugged and agreed because it wouldn't hurt him and wasn't worth the fight.

We removed the bed when he started showing an interest in taking it apart.  It made his room somewhat bare, but it was what he wanted and he seemed happy enough.

We had to remove most of Alex's furniture during his destructive phase.  A few months ago, I decided to try reintroducing some.  I put his dresser back in his room, knowing he would use it to climb on but, to be honest, he's big enough that I think it's safer than when he tried the same at five.  Now he's taller than the dresser and that thing is sturdily built enough to handle an elephant sitting on it.

He climbed on it and moved it to the window but didn't try to climb out the window, so I called it a success.

Then he started pulling all the drawers out and dumping the clothes in the middle of the room.

With a kid who wets his bed (on the floor) on a nightly basis, that was a concern.  I put the clothes in plastic bins and waited to see what would happen.

I couldn't have predicted it if you'd offered me a million dollars to try.

He lined up all four drawers upside down and then put his camping mattress on top of them to make a bed.

Unfortunately, a nail in one of the drawers has punctured the camping mattress, leaving us with a slow (and as yet unfound) leak.  But I'm taking it as a sign of progress and am working on getting the bed back.

The first step is going to have to be waterproofing it.  There are too many accidents to just let it soak into the MDF platform on a nightly basis and try to clean it.  (For the record: it can't be cleaned.)  I'm going to try oil-based paint and caulking to seal everything up.  I'm also going to try and make it so he can't pull the drawers out of the base of the bed.

I won't be able to secure the bed to the wall.  First, I'm going to have to be able to move it to clean underneath it since I won't be able to lift up the platform any more.  Second, Alex is strong enough to rip the darn thing right out of the wall, which is what he did last time, which makes the whole thing kind of moot anyway.

It's going to take awhile to get enough time to deal with it.  And then we'll get a new camping mattress to replace the leaky one.  And he might tear the whole thing apart the first time we put it in.

But it's worth a try.

Eager for Assessment Results

We had our last testing appointment this week.  Now we wait a few weeks for them to tot up all the test scores and we'll get our results. 

So far, the psychologist is quite eager.  She won't give us anything definitive until the feedback but she says she thinks it's possible for Alex to overcome some of his limitations (specifically not being interested in following instructions from someone he doesn't know or doesn't have a history with, or when he doesn't like doing what he's being asked, or is busy doing something else he enjoys ...).  She's pretty confident that she can help us put together a program which can help with toileting and eating.

I'm excited about this, too.  It's the first time in a long time we've heard something other than "Hmmm, he's a challenging one, isn't he?" which can be easily translated into "we don't have a clue how to help."  Traditional behavioural therapy wasn't very effective with Alex since he's not very reward driven (meaning he loses interest in rewards quickly and won't do something he doesn't want to do in order to get one) and he didn't generalize when he did learn new skills (if you can put on your shoes for Mommy, you can also put on your shoes for your teacher). 

Over and over, we were told to just keep going, just try harder doing the same things which weren't working.  Toileting is a prime example of this.  We spent four years on something we were assured could be accomplished in just a month or two.  We followed their requests, keeping him in underwear all the time despite the fact that he showed no interest in actually using the toilet.  For over three years, I cleaned up dozens of accidents daily.  We had a stash of two dozen pants and three dozen pairs of underwear.  And I did laundry daily so that we didn't run out.  After the first two months, the therapists ran out of ideas and then kept insisting we just needed to try a little harder for a little longer and he'd somehow spontaneously get it.  And we believed them, because they were the experts.

I don't want to discourage people from following their therapists' suggestions.  The traditional methods are traditional because they work for the vast majority of children with autism.  And there have been plenty of times where I thought a suggestion wouldn't work and it has.

It's been difficult watching other kids with less ability do better because they are able to follow directions (with help, usually) and can be guided out of problem behaviours.  I wish I could explain to Alex that he's limiting himself badly.  Eventually, he's going to want to have independence, earn money or have a girlfriend (or boyfriend).  But unless he can learn the basic skills of compliance and learn basic hygiene, none of those are going to be possible.

But frankly, what kid has ever done something with an eye to how it's going to affect him or her in adulthood?

Thoughts on Compliance

Compliance is one of those big underlying skills.  Being able to follow directions from authority figures, such as parents, teachers, police.  It also encompasses being aware of other people's rights, feelings and reactions, so that we can all function as a civil society.  That way, you don't need specific instructions for every situation: don't break that kid's toy, don't hit that person.

Compliance is not Alex's strong suit.

He's willing to follow instructions.  Sometimes.  If the person giving the instructions is someone he has a strong relationship with.  However, we, as a society, expect him to follow instructions even when he's never met the person in question.  Such as the clerk at the store who tells him to wait in line if he wants to make a purchase.

His mindset is very functional.  He will take whatever steps necessary to get his goal and unfortunately, he's discovered aggression is a very functional tool.  It can always be escalated to a point where it can't be ignored and then the focus has to switch from whatever demand has been put on him to dealing with the aggression.  He's not malicious, to him, it's a tool on an equal par with asking for things, only more reliable.

If he was compliant, we wouldn't have to worry (as much) about him turning around and thwacking someone because he doesn't like what's being asked.  We wouldn't have to worry as much about him simply taking off because he doesn't want to stay and watch me pick out sweat pants in the store.  We could go places as a family without a go-bag of distractions and having to eat or talk in shifts so that one person is watching over Alex.  We would be able to be more effective dealing with problem behaviours and teaching skills, like using the toilet or eating.

This is one of the main reasons we're going to Disney with just one child at a time.  Because the Happiest Place on Earth should not become a site of daily meltdowns, attacks and having to choose between staying with one child or chasing after the other.  Alex would not be tolerate of Nathan wanting to see something other than what he wants to see.  (He won't tolerate us wanting to see something different either, but we can handle our disappointment a little better.)

When the primary consideration for any given day is dealing with how to manage Alex since he will not accept being on anyone else's agenda, then he's not compliant. 

Update on Disney

I emailed the special diets team at Disney and got a response back which makes me think they didn't quite read my email.

I had sent them a list of food which Alex will reliably eat.  About thirteen-fifteen items in all.  And to make it clear he isn't just a picky eater, I explained that he had textural sensitivities and new foods had to be introduced slowly.  I listed our restaurant reservations and asked if we could be accommodated.

I got a reply offering to puree our entrees and asking me to send a list of our restaurant reservations.

Hmmm.  We'll have to try that again.

I will give them points for being eager to accommodate and this is probably an unusual request.  If I had an allergy, I bet they'd be all over that request and have it settled in minutes.

Now I just need to take the time to clarify.